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Saturday, March 3, 2012

If you have been on Facebook this past week, or read some other DOC blogs, you may already know that our sweet friend, Meri and her family were given some not so good news last weekend.

You can read Meri's post HERE. Her amazing husband was just diagnosed with metastasized melanoma. He has 6 tumors in his brain, as well as tumors in his lungs and abdomen. In Meri's post you can read about the treatments they started this week.

A FB page, Schuhmacher Family's Miracle, has been set up for friends and family to gather for updated information, prayer and support during this journey. We invite you to post prayers and reflections of hope on your personal blogs and websites. There will be a thread started there, where your links can be shared. If you do not have a blog/website, and would like to share your prayers, please feel free to add your thoughts and reflections to the thread as well. By keeping them in one place, the family will easily be able to access your words of encouragement in the days, weeks, and months to come. Please spread the word to anyone, and invite others to join this massive prayer effort as well.

I truly believe in miracles and I know that this family, specifically Ryan, need one NOW.

I am joining the Schuhmacher family and friends in a day of prayer and fasting tomorrow. I will spend the day praying for a miracle. A true, God is the only one who can do it, kind of miracle.

I am not typically a "public" prayer kinda person, please bear with me.

So, God, I know you are listening. Here is my plea.

Dear God,I thank you for being a God who can do so much more than we can do ourselves here on Earth. I have complete Faith that YOU, God, can heal Ryan Schuhmacher. And that is what I am asking of you now. I ask for comfort and peace while he endures the treatments in the days, weeks, and months ahead. But what I want more than anything, is for a miracle. The kind of miracle I know only you can give. In Jesus' name I pray, Amen.

Again I say unto you, That if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my Father which is in heaven. For where two or three are gathered together in my name, there am I in the midst of them.

Mathew 18:19-20

We are also uniting to raise money to help with Ryan's battle against cancer. If you can help in any way, please visit the Give Forward site below.

Most importantly, please continue to pray for the Schuhmacher family, specifically for a miracle for Ryan.

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Sleep Apnea. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Time to get out of this FUNK and move forward. I miss blogging, I really do. Just trying to fit it into my life these days has been impossible. Clearly.

So, what have we been up to since November 2011?

Here is the quick bullet point update...

The Princess had a sleep study done in December 2011. We had this done due to her continuing sleepless, restless nights. She hated the study and being hooked up to everything you can imagine. The results showed mild sleep APNEA, for her mostly hypopneas. It made total sense to me. She has never breathed normal when sleeping. Ever. I have always noticed a change in her breathing while she was sleeping. As to why, they have no idea. She doesn't fit the description of a "child with apnea". She isn't overweight and she didn't have enlarged tonsils. We are still working with her doctor and I have emailed a specialist in CA to see what else we can try.

The Princess had her tonsils out in December 2011. We did this in response to the above diagnosis. I pushed to get it done before the end of the year since we had met our out of pocket max for her. Of course, anytime we do any procedure, we have to get her platelets checked first. At this time, they were too low for this messy procedure and we had to do another IVIG to boost her counts before surgery. We also had to stay overnight for observation due to her ITP. And let me tell you, she is NOT a very patient patient! She tried taking her IV out a few times before we taped a sock over it. She would not let me leave the bed without FLIPPING out. It was nuts. But, we only stayed one night and she healed fine. Unfortunately, this did not help her sleep. Or it hasn't appeared to in the months following surgery.

The Superhero had his quarterly endo appointment in December and his A1C was still higher than I like. He is back in the 8's and I can't seem to get things straightened out. We go back in March and I am praying for better numbers. There is nothing consistent about his BG these days. This is making it HARD to know what to change and when. I am sure it will settle down at some point.

Both kids had croup in January. This meant steroids for both. For The Superhero, this meant HIGH BG's and, hello, that is not helping the A1C! And for The Princess, it boosts her platelets. This can be deceiving and make it look like the ITP is better, when it really may be false hope

The Princess has gone for platelet counts several times over the last few months. Each time being either after an IVIG treatment, or after steroids, her counts have been good. We go back again in April. It will be 1 year since her dx with ITP. If her counts drop by then, we will be discussing doing a bone marrow biopsy, just to make sure there isn't anything else going on.

The Superhero is still in pre-school and loves every minute of it. He has been signed up to start Kindergarten next year. I am still in denial.

The Princess has been put in and taken out of daycare again. I need her to go so I can get work done during the day, but she got sick 3 times in the 2 1/2 weeks she had been back. I have found a much better solution that is working out SO much better. A fellow D Mama and friend of mine who lives 1 mile away does pre-school with her niece and nephew a few days per week and has graciously allowed me to drop The Princess with her three days per week. The Princess is in LOVE with her and her kids. They do so many fun things that I think if there was a choice, The Princess would live over there.

Whew... Now that you are caught up on what we have been up to, I promise, ok maybe I shouldn't make a promise I am not sure I can keep... I will do my best to keep up with blogging more often. I miss it. I really do. I just need to make it fit into my life again.

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Sleep Apnea. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*